I’ve been on Ursodiol since I was diagnosed with PSC (no IBD or UC) about 7 years ago, I’m in my mid 30s now. I’ve been reading more about Vanco the past year, and wanted to try it. I started taking Vancomycin a few months ago (1500mg per day) while continuing to take Urso, and my liver enzymes have improved, but not normalized. This past year, my blood work has been Alk Phos in the mid 200s, ALT between 80 and 100, AST 50s to 70s.
Does anyone take more than 1500mg/day of Vanco? If so, how much per dose and how many doses per day?
Does anyone take Urso in addition to the Vanco?
I’ll talk to my doctor about this as well, but I just wanted to see what other people in the community have been doing to get as much info as possible.
What type of vanco do you take (pills, compounded liquid, etc)? What brand? There are therapeutic equivalence issues with the pill form generics thought to be caused by differing rates of gel cap dissolution. Some people have had success popping open the gel caps before swallowing (simply screw off the empty larger diameter side of the pill).
Some people need fairly specific high doses to normalize and stay normal (eg. 2000mg elevated; 2250mg normal). I believe Mayo and Stanford have experimented up to 3000mg/day. People take bid, tid, and qid.
Urso at moderate doses is unlikely to hurt anything.
Insurance covered it, but honestly it made me feel worse and my labs didn’t normalize so I stopped taking it(was on it for probably 4-5 months). I’m still on the urso.
Hard to say if Ani pills will work better in your case. I think it is a variable worth exploring. Some pharmacies can special order particular brands; the trick is finding a pharmacist that will make the effort.
I experimented with brands before people thought to open the gel caps. I didn’t normalize on Alvogen (600 ALKP to 300) and normalized immediately after switching to an IV liquid compound. I later switched to Vancocin pills (authorized generic Prasco and later Ani) and everything stayed normal.
I currently take 375mg/day. I originally took 1500mg/day and have tapered down over time. It seems I’m more sensitive to brand vs. dosage amount. I also do not have IBD.
At 31 I was undergoing the transplant listing process due to recurrent cholangitis. This is also when I started taking vancomycin. At 33 I started taking Vancocin pills. At the time these could be found in a generic box through the Prasco brand (the “authorized generic”). This was around the time that Viropharma sold Vancocin to Ani. Around 2016, Ani axed the deal with Prasco and began to sell the authorized generic in house. These days, the two ways to get Vancocin pills are the name brand box from Ani and the authorized generic box, also from Ani. I’m 41 now and still going strong on the treatment.
You might ask your provider to do a peer to peer call with your insurance and tell them it’s medically needed for your care. I have Blue Cross Advantage here in North Carolina and it covers mine with no issues. I’m taking it post transplant to keep down inflammation in my bile ducts. 125 mg every 6 hours.
I am happy to share with you published papers on oral vanco therapy. Also I have templates that you can use to appeal insurance denials. They have been pretty successful.
I showed him the Stanford study in California, and he was willing to give it a shot if I monitored my labs closely. It did not end up working for me unfortunately.
